Lifeblood Buddies!!!

So we had a few teething problems but Lifeblood Buddies is now hopefully all tweaked and ready to go!

Lifeblood buddies is there for anyone who has been affected by a thrombosis- anytime in their life.

Maybe you had a DVT, PE or any other VTE episode, maybe this has totally changed your life. Maybe you have come back to full health after an episode, perhaps you lost a loved one due to the condition, or know of someone affected by it. Whether you have just been affected or this has been part of you life for a number of years Lifeblood Buddies would love you to join.

However thrombosis has affected you, your experience can be highly beneficial to someone else, and likewise theirs to you- to be able to have 1-1 contact with someone who just gets it, who can empathise rather than sympathise- who can be with you through the feelings, help you out with practical tasks, have a glass or two of wine, gin, tea or whatever! and talk it out- that's what Lifeblood Buddies is about.

Sometime life throws you stuff- Lifeblood Buddies shows you you are not alone and helps you to keep going, take a break, let off some steam or whatever it is you need.

Sign up to Lifeblood Buddies today!

Help me, help you, help others, help themselves!

Lifeblood Buddies Launched!

Its been a long while since I have posted anything, and this is for a combination of reasons, life has a way of running away with you sometimes.

As many of you know who follow my blog or know me, I am passionate about creating more support for those who have been affected by thrombosis and have been working with Lifeblood for the last 6 months or so on this.

I am very excited to announce that the first initiative has been launched today!!

The Lifeblood Buddy System is a mutual support system aimed to help match those affected by thrombosis in order to be able to offer each other support and advice. Giving people the opportunity to have someone at the end of the phone, the email or to meet up with who can really understand what they are going through. We are also going to have the first ever Patient Day in National Thrombosis Week- so lots of exciting things happening in 2014.

I really hope this is just the beginning of bigger things on the patient support side. Unfortunately thrombosis does continue to affect people and take lives and together we can get through that and cope with day to day life.

For more information go to www.thrombosis-charity.org.uk and to take part in the buddy system click here

Help me, help you, help others, help themselves

Thrombosis Changes Lives...........

Its been a while since I have posted and today after my morning gym routine I notice an update on the Lifeblood: The Thrombosis Charity facebook group that made me stop and think.......

...... the first line said, "Well I get my scan on Wednesday, to see if my leg can be saved......" Wow- it really hit me, this person could lose their leg, a simple sports injury and months later they could lose their leg.

There was something about it happening to someone else that made it more real for me. After a DVT and PE's I now suffer from PTS and have a pretty damning report from a top vascular consultant about all the conditions I am very likely to get due to the severity of my PTS and how limb amputation is something too that could happen to me should my veins get so bad and as a result of the leg ulceration I may get. But it all feels like a narrative, a non reality, but today reading this post from someone I feel like I know through the Lifeblood facebook group, the reality of how much Thrombosis can change your life, and does change lives really hit me. All this could have been prevented, I know it is only a could and not a definite but surely it is worth while fighting for something that may be able to change lives, save lives and prevent complications like this happening. Lifeblood work tirelessly to promote thrombosis awareness in and out of the NHS, and to ensure better preventative practices are in place. My just giving page is still open and if you feel able to please donate, www.justgiving.com/katherineelizabeth 

One day the post I read today could be me, that IS my reality. PTS is a permanent condition, a complication of DVT's and PE's. It affects me everyday. I am trying my hardest to be fitter and in better health and self manage my condition, but what if I can't, and I do find myself in a similar situation to that of my facebook friend. I have already had to totally change my lifestyle, re-train for a new job, imagine just how that would be, and how all the other people affected by thrombosis what they go through, imagine what that sudden change feels likes.

You have a routine operation, you go on a plane, you work in a job where you sit alot, you injury yourself doing sport, you take the contraceptive pill, you fall pregnant, you just go about living your life and then one day everything changes. A blood clot, it prevents the flow of blood around your body, you're in pain, crazy amounts of pain that feels like it came from nowhere, or maybe you feel nothing, no pain at all, then you can't breathe, you feel old before your time, then everything changes- maybe it wasn't found soon enough and your family have to grieve the sudden loss of a loved one, or maybe it was and you are one of the lucky ones but life will never be the same for you again. Hospital appointments, blood thinning medication, compressions stockings, perhaps thats it- the clot has gone and while the situation was scary you can carry on with your life, grateful for the knowledge you now have of what that mysterious pain could be, or maybe this isn't it but the start of a totally different you, a you that has to learn to know their limits, change their lifestyle, think about a new career, adapt their home, lean on others, lose their independence, lose their leg. Now like this facebook friend, it doesn't have to be doom and gloom and I am so humbled by their positivity and bravery, but that requires support, and not everyone is able to deal with what life throws at them. I wasn't offered any support from my hospital & I am forever grateful for the support I have from loved ones around me, but I got nothing from the consultant or vascular team. 'Your life has totally changed and will continue to do so, the end.' I am not blaming them, there is no support available, but there should be, there has to be and if I have anything to do with it there will be. It's not easy asking for help, but that is what I am doing. Please help me get to my target- or even smash it and think of any other ways I can continue to raise money for Lifeblood The Thrombosis Charity- with me they will implement support for those affected by thrombosis, and though prevention is key, if you are faced with new challenges due to Thrombosis, you won't do it alone and support will be available.

Help me, help you, help others, help themselves

National Thrombosis Week Day 5- 8km Done!

Just got back from nannying and am feeling utterly exhausted- Day 5 done!

Its been a busy week of nannying, teaching, placement meetings, college and of course raising money for Lifeblood

I decided to challenge myself to swim 8km thats 400 lengths and bake cakes and delivery them to lovely donators.

Well I have done it! I have a couple more orders for cakes and can take a few more so if you want some cakes download an order form from my justgiving page- I will also be announcing the winning of the raffle to win a 13" uber cake tomorrow exciting stuff!

I can't believe that two years ago I was in a wheelchair and now I've just swam 400 lengths! I still remember first starting hydrotherapy and my exercises in the pool with James, then working my way up to 1 length then 5, then 12, then watching videojug swimming tutorials to learn to swim properly and now well- I can't even believe that was me!

Now it is time to rest, relax and hopefully reach my target of £1250.

If you can help in anyway I and Lifeblood would be so grateful.

www.justgiving.com/katherineelizabeth

DAY 2 NATIONAL THROMBOSIS AWARENESS WEEK 2013

So I have just got back from the pool after completing another 100 lengths!!! I have now done 200 lengths (4km) and am half way to hitting my 8km target. In a mo I am heading to the kitchen to start baking some more cakes for the bakeoff part of my fundraising and am really hoping that with your help I will be able to hit target and raise £1250 for Lifeblood:The Thrombosis Charity.

While I was swimming my last 20 or so lengths I started to think about how far I have come over the last two years. Today is the Wedding Anniversary of the lovely Bill & Emma Pragnell and I remember being at their Wedding in my wheelchair, a lot heavy than I am today and still finding it hard to breathe. I look at the picture below and I can't even really acknowledge that it is me.

My journey over the last two years has been pretty up and down- first the reality of having a DVT and multiple PE's, not being able to breathe, still trying to recover from knee surgery, not being able to dress myself, have a shower, make myself a drink/food or really do anything without feeling like I'm going to pass out. The reality of all that and how it impacts your independence, not being able to work, having to move in with my partner came with its positive and negative qualities. Then beginning to understand my limitations, going back to work a bit, then a bit more, feeling more positive about it all then being hit by the news I have Post Thrombotic Syndrome and that this will never go away. Of course there are good days and bad days but suddenly the realisation that this is a permanent condition. Surgical stockings will always have to be worn, blood thinning injections taken when flying and really trying to to tune in and listen to what my body is saying on a daily basis.

It is been an emotional journey too, fear, anxiety, anger, childish 'its not fair' moments. After getting myself as 'better' as I could I have really been focussing on the support and well lack of support to those affected by thrombosis, hence the blog Thrombosis Support. This month marked a turning point for that quest and journey as I had previously felt so alone and unable to do anything. A great meeting with the Lifeblood trustees enlightened me to the red tape surrounding anything like this, that I had already begun to discover, but also I saw a group of people who were behind me, and could give me the platform and support needed to make something happen. I am more determine than ever now to raise money for Lifeblood, to give my time and ideas and use my training in psychotherapy and the colleagues I am meeting to really give something back and let people know they are not alone.

This is me today;

a little tired maybe, but happy and hopeful that things can and will get better, and that sometimes it is time to stop blaming & moaning and start making things happen. Please if this touches you in anyway and you feel you may be able to help go to my page www.justgiving.com/katherineelizabeth

You can check out my video diaries here:

Have a fabulous day and thanks for reading!

Help me, help you, help others, help themselves

Thrombosis Support & Lifeblood..... a match made in heaven?

So tomorrow I have a meeting with Lifeblood:The Thrombosis Charity trustees to put forward my Thrombosis Support idea and how we can work together, and convince them to do so hopefully!

As many of you know this blog was set up not only for me to have a little moan about how thrombosis has affected me and my daily dealings with it, but also because I am passionate about creating a support network for those affected by thrombosis. It is one thing to moan about what isn't in place and what is needed, and quite another to actually get off your backside and do something about it- that is what I am trying to do.

I have had big ideas, and high hopes of what Thrombosis Support can be and visions of advertising campaigns in the future and national races in aid of it, and then often feel slightly deflated when I realise I am just one person trying to make something happen. That is one of the reasons that I want to work with Lifeblood, under their umbrella as it where. They are an established charity with I feel a hole, support, that needs to be fronted and filled- I think that is where my ideas come in. I did not realise just how much red tape there is around setting up a charity and I certainly do not often have the patience with form filling in, I think together we can really help others and make a difference. Also one of things I have noticed is that a lot of the fundraising for Lifeblood is done by those who have been affected by Thrombosis, be that have had an episode themselves, know someone who has been or who has sadly lost a loved one. I think to continue the support Lifeblood so desperately needs from the public there needs to be something in place for them, (not to belittle what Lifeblood already do as that is brilliant a too needed).  A support network where they can interact on a number of different levels with people who know what they are going through, where they can offer each other coping methods, advice, support, compassion and friendship. I go from my own experience, I desperately wanted to communicate with someone who understood the emotional side of my thrombosis, and the continuing effects. I remember my consultant writing in a report regarding my PTS and compression stockings that "the patient should wear full length compression stockings from first thing in the morning till last thing at night, even when on holiday and in a hot climate, though a little discomfort may be felt she will soon get used to it." I really wanted to call him and say "you try wearing them all day in a hot climate!" cheek I thought you have no idea. I needed humility and reality about how my life was now going to be. I really hope that that is what I can offer.

The meeting is tomorrow- if any of you have anything you would like me to say from your personal opinion of what is needed, please let me know.

Thanks for reading and if you're able to please help me raise money for Lifeblood The Thrombosis Charity please go to my page and lets hope that Thrombosis Support can become one of their new initiatives!

www.justgiving.com/katherineelizabeth

Help me, help others, help themselves

National Thrombosis Awareness Week 6th-10th May Swimathon Bakeoff!

So I started the day with a swim and then dropped off a batch of cakes to my friend for her birthday- felt like a national thrombosis awareness week fundraising dummy run!

I will be swimming 8km thats 400 lengths and taking 32 orders for cakes.

Maybe you have a birthday coming up and fancy a cake, perhaps it would be the perfect treat for all of your work colleagues or maybe you just like eating cake and this is the perfect excuse!

Order forms can be downloaded here

If you don't fancy any cakes and just want to sponsor me for swimming check out my page:

www.justgiving.com/katherineelizabeth

Thank you

Also I will be doing a raffle!
Tickets cost £1 per ticket £5 a strip, buy for you chance to win a 13" uber cake!!!

x